Background: Medical registries serve patients as beneficiaries of quality standards and new treatment opportunities. However, it has been argued that registries threaten patient privacy interests and should therefore be more strictly regulated.
Methods And Results: With the European Treatment and Outcome Study for Chronic Myeloid Leukemia as a concrete example we identify and describe how four of the major arguments put forward for stricter regulation fail.
Conclusion: We conclude that medical registries should be promoted both for research and quality control, and that the regulatory bureaucratic burden should be reduced.
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http://dx.doi.org/10.1016/j.canep.2012.06.009 | DOI Listing |
NPJ Digit Med
January 2025
Technology & Innovation Hub, Shirley Ryan AbilityLab, Chicago, IL, USA.
Early screening and evaluation of infant motor development are crucial for detecting motor deficits and enabling timely interventions. Traditional clinical assessments are often subjective, without fully capturing infants' "real-world" behavior. This has sparked interest in portable, low-cost technologies to objectively and precisely measure infant motion at home, with a goal of enhancing ecological validity.
View Article and Find Full Text PDFSci Rep
January 2025
Department of Radiology, The First Affiliated Hospital, Hengyang Medical School, University of South China, Chuanshan Road No. 69, Hengyang, 421001, Hunan, China.
To determine the diagnostic performance of dual-energy CT (DECT) virtual noncalcium (VNCa) technique in the detection of bone marrow lesions (BMLs) in knee osteoarthritis, and further analyze the correlation between the severity of BMLs on VNCa image and the degree of knee pain. 23 consecutive patients with clinically diagnosed knee osteoarthritis were underwent DECT and 3.0T MRI between August 2017 and November 2018.
View Article and Find Full Text PDFBMJ Glob Health
January 2025
Sickle Cell Programme, Department of Haematology and Blood Transfusion, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.
Despite progress in healthcare services for individuals living with sickle cell disease (SCD) in Africa, substantial gaps remain in advanced treatments for SCD. To help address this burden, Tanzania has established one of the largest single-centre SCD programmes in the world and developed an advanced therapy programme for SCD focused on patient engagement and advocacy, clinical activities involving exchange blood transfusion (ExBT) and haematopoietic stem cell transplant (HSCT), gene therapy (GT) preparedness, and enabling partnerships. This report describes the programme's genesis, structure and progress achieved.
View Article and Find Full Text PDFPract Radiat Oncol
January 2025
Department of Radiation Oncology, Allegheny Health Network, Pittsburgh, PA. Electronic address:
Purpose/objective: Partial breast irradiation (PBI) delivered with intensity modulated radiation therapy (IMRT) over five fractions every other day (QOD) represents an attractive, convenient method of delivering adjuvant radiation therapy for well selected patients without compromising oncologic or toxicity outcomes. Condensing this regimen to a week of treatment through consecutive daily delivery may further increase patient convenience, though comparison of toxicities between daily and QOD regimens are limited.
Materials/methods: We retrospectively reviewed 507 patients from an institutional registry undergoing PBI for DCIS or early-stage breast cancer (T1-2N0/x) from 2015 to 2022.
Food Chem Toxicol
January 2025
Member Expert Panel for Fragrance Safety, The Journal of Dermatological Science (JDS), Department of Dermatology, Hamamatsu University School of Medicine, 1-20-1 Handayama, Higashi-ku, Hamamatsu 431-3192, Japan.
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